Happy Thanksgiving!

This has to be the best Thanksgivings of them all. Last week I was losing hope. I felt despair and grief that Tanner would NEVER come home. I saw bars on every window at the hospital. I ignored my birthday because our family wasn't together. I was actually going to give up blogging because I couldn't find anymore good in the situation.. But yesterday, due to our fabulous nurse Practitioner Laura, we left UCSF WITH TANNER! I FINALLY got to see the hospital in my rear-view mirror! Whew! What a roller coaster week! Mark had been with Tanner since last Tuesday so we were ready for the trade-off (he had last minute "dealings" with the old house to finish) and the doctors had told him Tanner would NOT be home for Thanksgiving because the home nurse wouldn't be available until next Monday. We were devastated that Tanner was perfectly healthy but couldn't come home because of staffing difficulties! So when I arrived Tuesday, my first question was, could I have friends that were RNs help with Tanner's meds and dressing changes over the weekend? And immediately Laura started digging for answers. Mark left with the news that Tanner's antibiotics would be ready by Friday and we would be taught by the pharmacy how to use the pump. So Tanner and I left for the afternoon session of the playroom. He was showing me how he could jump around in the ball pit when Laura called me out into the hallway. With her was the charge-nurse case worker and they told me of the new plan. (It STILL seems surreal). Tanners meds and pump were to be delivered to the hospital Wednesday by 3:00. A nurse from Crescent Health Care would come and teach us how to use them. The home care nurse would come Monday morning with the next week's supplies and do a dressing change on the PICC line. Tanner was scheduled for a cardiology appointment on Monday, November 30th. And once our teaching was done...WE COULD GO HOME!!!!! I jumped up and down and hugged each of them several times!! Mark had barely gotten home when I called him and asked him "how'd you like to have Turkey in Brentwood!". He thought I was teasing! Its just been absolutely like a dream ever since. ALL our prayers were FINALLY answered! We will still have to go back to UCSF for a new PICC line December 11 but we are HOME! And even one night at home is worth it! Mark's parents are here today making us a wonderful turkey dinner while Mark and I sort through boxes and assemble beds. And the magical voices of 4 children playing upstairs! Happy Thanksgiving!

OMG...is this it?

Mark traded with me on Tuesday...he was physically exhausted from moving and I was emotionally exhausted from the hospital! I have been busy busy unpacking! But it sure is a lot easier than packing (and enjoyable!). Mark has spent the last few days running (yes, running!) Around behind Tanner....up and down the hallways and they have become regulars at the playroom! Here on the homefront, the kids have had minimum days due to parent/teacher conferences...so I've been back and forth to school each day. All the kids are doing very well...ESPECIALLY due to the circumstances...I'm so proud of them! Tanner's wound check was today...and FINALLY, it looks awesome! The surgeon was so confident, he took off the suction, no wet packing, and now the site ONLY has 2 loose stitches and a gauze covering! He actually told Mark he felt real bad Tanner was still in the hospital and they are working extremely hard to have him home BEFORE Thanksgiving! What a birthday present for me! I'm not celebrating until Tanner is home...and therefore, I am STILL 25! HeeHee! So the next step is arranging home care. A nurse will come to check-in with Tanner (wound and antibiotics) every other day...so that's great news! More to follow....

Week 8 and 1 day

I am very tired. It has been an emotionally exhausting day. Tanner went to the ICU at 11am to have his wound inspected. Anesthesia was there and put him out. The wound looks good, but still not healed enough for stitches. So back on went the suction cup to Tanner's tummy. While he was "sleeping", they did a dressing change on his PIC line and gave him a bath! The nurses joked it was his "spa day"! Now it was funny until Tanner woke up. He is inconsolable, mad, mean, (and you get the idea). It continues for about 2 hours and then he settles down. He actually looked at me and said, "mom, can we change the bandaid later?". He had no memory of the procedure. Wish I could have some of that too! But then the tantrums, screaming, and kicking kept showing it's ugly head throughout the afternoon and evening. The nurses try to help...but we just have to ride it out. Its just getting harder and harder for both of us. And they are going to check the wound on Thursday, so that means back to the ICU...I'm going to let Mark handle this one...my ICU experience ended with one Nurse Practitioner, who is the surgeons right hand, tell me her goal is to have Tanner home by Xmas. What a great thought.

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Tanner being silly with his rubber bracelets!

Friday ending week 7

So yesterday when I signed the consent form for the suction/dressing change, they said Tanner would go down first thing, between 8 and 9 am. That sounded real good because after midnight, nothing to eat or drink. And Tanner gets to be a real bear when he's hungry! But later, the nurse came back an hour later and said anesthesia had meetings so Tanner wouldn't go down until 10am. Its so interesting to me how they "lay down the law" but they let ME be the enforcer! They aren't here to hear him scream on and on for chocolate milk at 2am! Anyway, at 6:45am the nurse woke me and said "the OR just called and they are coming for Tanner". So I was excited because they were early! No more stalling food and drink! So we headed down to the 4th floor, Tanner gets a little sedation and then the phone rings for our nurse. Its the surgeon Petros who says Tanner was supposed to be in the OR at 10am!!! What a fiasco! Anyway, somehow it worked out and the procedure went really quick. The wound looks clean, its healing nicely, but they are keeping the suction on until Monday. The bummer is, the culture from the cartilage came back positive for bacteria. This means 6 weeks of antibiotics because there isn't a lot of blood flow in bones like tissue, so they have to go longer on meds. Now, good news is the antibiotics they had already started IS compatible for killing the bacteria! Also, they do send home patients with IV antibiotics. It's just another waiting game (that I really HATE playing) for the wound to heal. We're here at least another week. Mark is home packing the house, moving boxes, and shuffling the kids around this weekend. I think we'll do the ole' switch-er-roo Monday after the next suction/dressing change.

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Tanner checking out his smelly toes!

Thursday

So today has been relatively quiet, no procedures, no xray, no pokes...JUST BINGO! We came back yesterday to our same spot (sans beautiful Tanner artwork) where our fun family roommates of 4 weeks were waiting! Their 6 year-old son also had the Fontan surgery and the boys AND parents have enjoyed their time together. Thank goodness we met...it makes the "hurry up and wait" a little easier. Tomorrow morning Tanner heads back to the OR and then we will know how much longer he has stay (although we know how that changes!). There was a little bit of infection so he'll be on antibiotics for at least 2 weeks but they will begin that orally on Sunday.